A year and a half ago, my best friend’s life became a whirlwind of symptoms, appointments and invasive testing. After all this time of searching for an answer, she has received an earth shattering diagnosis.

Lacey has been diagnosed with Limb-onset Amyotrophic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig’s Disease. For those who aren’t familiar, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It will cause paralysis, affect her lung function, affect her ability to do things like speak and eat, and so much more. Each patient’s progression of the disease is different. Some people decline rapidly and pass within months, while others live 10 years or more. The average life span is 2-5 years after diagnosis.

Lacey’s plans for the future have been ripped away from her. As she and her family begin to come to terms with this news, I want to help them in the most meaningful way I can think of: by raising funds to put towards the enormous expenses they have and will incur as a result of the disease.

Even with great insurance, medical bills are still an immense burden and have begun to pile up after a year and a half. The family’s home will require remodeling in order to make it accessible for Lacey. Equipment, such as a Hoyer lift and a chair-accessible vehicle, will be needed as things progress.

At this stage, Lacey’s doctors are not able to provide a timeline because the disease is so unpredictable. While she currently appears to be in a “plateau” , I want to ensure she has as much support as possible for the future as well.

I know times are hard for everyone right now but if you have the means to help with even a few dollars I know Lacey, her family, and all of her friends will be eternally grateful.

A message from Lacey

“My will to live is strong. The unwavering love I have for my son, husband, family, and friends keeps me going. This disease has and will continue to take everything from me. I will not let it take my spirit.

I have ALS, but ALS doesn’t have me.”

1/26/25 UPDATE:

This past Thursday Lacey had her second ALS Clinic appointment where she meets with her team. For 3 1/2 hours she spoke with her neurologist, nurse, respiratory therapist, speech therapist, physical therapist, social worker, and ALS Arizona rep. Dr. Johnson (neurologist) shared that Lacey is now considered later stage in her progression and has been asked to consider hospice. Her respiratory therapist, Dr. Hamilton explained that her lung capacity dropped from 38 % to 17% FVC. She has been given the option of a tracheostomy which will require 24/7 care and greatly impact her ability to speak. She already has a surgery scheduled for 2/27 to have a peg tube placed in her abdominal wall to ensure she is getting the calories and hydration she needs.

Aside from bills (both medical and monthly expenses) Lacey and her family’s financial burdens include a need for 24 hour care (30+ an hour) and an accessibility van to be able to extend Lacey’s comfort and life.

Though this is not the news we were hoping to receive, Lacey is doing her best to remain strong and fight for her time to remain earth side with her loved ones.